Ontario children and teens with autism faced long waits, education loss in 1st year of pandemic, report finds

Breanna Touhey of Kitchener, Ont., saysshe was supported by the local community immediately afterher son was diagnosed with autism in October 2020.

Touhey, a special education resource teacher, knew to register her son in the Ontario Autism Program, which provides families with funding to access therapy. But she alsoknew it would be a bit of a wait.

However, after joining the Ontario Autism Coalition Facebook group,she learned through the discussions that parents who had applied for fundingafter she had put in her application werealready getting the money. So she became frustrated.

"I am an incredibly tenacious person and when it comes to my kids, there was just like no stopping me."

Touhey emailed her member of provincial parliamentand asked questions. Ashort time later, the funding arrived.

But she remainsconcerned about the families stillfacinglong wait lists.

"It's just knowing where to look at, knowing who to talk to and knowing how to push to get your kid what they need.But the part about it that doesn't feel fair is that you always feel like you have to be doing that. You always feel like you have to be fighting," she said.

"What about the families who aren't able to get to be the squeaky wheel and don't have that support to keep pushing? How long would we have waited? That's been hard, I would say, is just seeing the inequality of what some people get when they get diagnosed."

Report details feelings of parents, caregivers

Many parents felt the province didn't supportchildren's needs for therapy enough during the first year of the pandemic, according to anew report from the Laurier Autism Research Consortium at Wilfrid Laurier University in Waterloo.

The "Families in Flux" reportincludes the experiences of2,685 caregivers who were recruited through emails and newsletters to take the surveyin July 2021.

When asked to expand on their concerns with the Ontario Autism Program overthe previous 12 months, parents and caregivers reported wait times or delays inreceiving funding weresecond to COVID-19-related disruptions.

The report found 53 per cent of respondentssaid the program funding they received met their child's therapy and support needs "to a low extent or not at all."

Forty-sevenper cent of respondentssaid they did not receive even an hour of therapy funded by the provincial program.

Life was 'a real roller-coaster'

Janet McLaughlin,aWilfird LaurierUniversity associate professor in community healthandco-director of the Laurier Autism Research Consortium,whichwas involved in "Families in Flux,"said the goal ofthe report was to update the findings of a2019 survey.

McLaughlin, who supports a son with autism, described her personal experience during the pandemic as "a real roller-coaster."

"It felt like the hardest challenge of my life. And every day I woke up just thinking I have to get through today and hopefully things will get better tomorrow."

The advocacy group Autism Ontario says theneuro-developmental disorder impacts howa person communicates and relates to people and the world around them. There is no cure, but therapies can improve the symptoms and experiencesofmany with autism. The group says it's estimated up to two per cent of the Canadian population, including about 135,000 people in Ontario, are on the autism spectrum.

For many, including her own son, McLaughlin said access to in-person education was disrupted when school was shifted to remote learning during thepandemic.

"Many of the students, for example, were sent home because they didn't have proper supports to support their autism related needs on top of COVID," she said.

"And for many children on the spectrum, they weren't able to learn remotely. And so this actually amounted to pure education loss."

When it came to online learning, the survey found:

• Seven per cent of caregivers reported their child was not at all engaged.
• 50 per cent reported their child was poorly engaged.
• 29 per cent reported their child was moderately engaged.
• 14 per cent reported their child was well engaged.

McLaughlin noted the survey also found 26 per cent of children with autism missed 21 weeks or more of school, either due to COVID-19 or other restrictions.

"I think the thing that surprised me most was the sheer amount of education loss," she said.

Lack of consistency a problem

That was the experience of Kerry Monaghan,who has two children with autism. The Ottawa mom'sson was often eligible to be in school with his assigned worker, but her daughter wasn't.

Monaghan saidthere was a disconnect between when the province would make an announcement and whether her school would allow her son to attend.

"What we saw happen was with each shutdown, it was approached differently. With each shutdown, we never knew right away. There were scenarios where some kids were allowed to go and others weren't.

Sometimes it would be more than a week before anyone could answer her questions.

While in flux,she said,she had to monitorher children, and at times,she begged her self-employed husband to take time off work.

"The amount of ups and downs, and unknowns and chasing answers created just so much chaos."

A spokesperson for Education Minister Stephen Lecce said the province has worked to strengthen supports and professional development opportunities for educators, "including more than doubling funding to over $40 million to support students with autism in the classroom."

As well, in "exceptional cases" students with special education needs who couldn't learn from home were permitted to be in school.

Pre-pandemic problems

Toronto mother Angela Brandt agreedthe pandemic has been stressful, but said for many across the province, the anxiety about accessing programs began before COVID-19 hit.

Brandt, whose16-year-old son has autism, is president of the Ontario Autism Coalition.

She said the previous Liberal government had developed a "fairly decent" needs-based plan, which the Progressive Conservatives "decided to bulldoze" when they were elected in 2018.

Under the new program introduced by the province in 2019, children aged five and under would receive $20,000 for therapy, and those six and older would receive a $5,000 subsidy.

Her son's program was about $90,000 a year.

"So $5,000 is a drop in the bucket," Brandtsaid.

She saidshe doesn't see any desire by the provincial government to make changes.

"They've abandoned us. We feel abandoned. We, like the community, just feel like this government is heartless and callous. And frankly, I don't know how they sleep at night."

Province says it's making 'positive progress'

During question period on Monday, in response to questions about whether the Ontario Autism Program was meeting families'needs, Minister of Children, Community and Social ServicesMerrilee Fullerton said 40,000 children in the province are receiving support.

She also said the government has doubled the budget for the program to $600 million a year.

Krystle Caputo, a spokesperson for Fullerton, said in an email that the province is "making positive progress, and remain(s) on target to launch the independent intake organization this spring and bring 8,000 children into core clinical services by the fall."

The intake organization will be called AccessOAPand families will receive information about it this month.

Access needs to be equitable, advocate says

Margaret Spoelstra, executive director of Autism Ontario, said the survey from Laurier researchers echoed what her advocacy group has heard from families.

She said government ministries such as health,education and childrenneed to align to help people.

"We do have families who have good experiences, but that is not the case equally across the province of Ontario," she said. "That shouldn't be so. It should be that no matter where you are in Ontario, you have access to supports to help your child grow and learn."

McLaughlin saidshe hopes the report will inform provincialautism policy going forward.

"We have an election coming up [June 2] and I do hope that with everything else going on, autism and disability services generally can make that election agenda

She also hopes the reporthelps other parents and caregivers see they weren't alone in their experiences during the pandemic.

Touhey saidshe wants to see a return to full in-person appointments for children. She also wants the province to focus on the long wait times.

"When you are a family and you're in crisis, whether it's behaviour or whatever it is, that wait is excruciating," she said, adding her son is now in a pilot programto prepare him for school.

"I love being part of it," she said. "I think that this is a great step forward. I wish that every child needing it could have access to it."